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Project document and wireframe for the Consent to Research project at http://del-fi.org/consent

Project document and wireframe for the Consent to Research project at http://del-fi.org/consent

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Consent to research  Consent to research Presentation Transcript

  • consent to research
    designed by:
    john wilbanks
    sponsored by:
    Sage Bionetworks
    Kauffman Foundation
    Lybba
    pro bono counsel provided by:
    danvorhaus
  • traditional
    study
    institution
    “normal” home of research study
    - university
    - medical center
  • novel
    institutions
    emerging home of research study
    - may invest at university
    - may invest in novel studies (including mobile, company, ???)
    traditional
    study
    institution
    “normal” home of research study
    - university
    - medical center
  • novel
    institutions
    • forming nodes, but not networks
    • unlikely to achieve integration
    traditional
    study
    institution
  • novel
    institutions
    novel
    institutions
    traditional
    study
    institution
    novel
    institutions
    novel
    institutions
    traditional
    study
    institution
    traditional
    study
    institution
    novel
    institutions
    traditional
    study
    institution
    traditional
    study
    institution
    traditional
    study
    institution
    traditional
    study
    institution
  • privacy
    aggregator
    • privacy intermediaries to facilitate private access
    • empower granular access to private information
    • focused on HIPAA sensitive data
    privacy
    marketplace
  • what‘s missing?
    public access to information needed to build models of disease
    the role of research in the system - of individuals who want their data used to generate new knowledge
  • what do we propose to build?
    standards that allow for open and extensible communication across all four classes of entities.
    the creation of “public genomic records” that are individual, but not identified
    consent systems and user interfaces that allow those public genomic records to move from place to place
  • what do we propose to build?
    standards that allow for open and extensible communication across all four classes of entities.
    the creation of “public genomic records” that are individual, but not identified
    consent systems and user interfaces that allow those public genomic records to move from place to place
    Sage Bionetworks
  • what do we propose to build?
    standards that allow for open and extensible communication across all four classes of entities.
    the creation of “public genomic records” that are individual, but not identified.
    consent systems and user interfaces that allow those public genomic records to move from place to place
    Consent to Research
  • “approve once, research many times”
  • sage bionetworks “public genomic records”
    “static” genomic
    data
    full genome sequence
    genome variation (i.e. 23andme)
  • sage bionetworks “public genomic records”
    “dynamic” genomic
    data
    DNA expression
    RNA expression
    methylation
    “the new new machine”
  • sage bionetworks “public genomic records”
    “observational”
    data
    phenotypic
    disease response
    “ambient” data (smartphones etc)
  • sage bionetworks “public genomic records”
    “static” genomic
    data
    “dynamic” genomic
    data
    “observational”
    data
  • sage bionetworks “public genomic records”
    requires “informed consent” to share.
    “static” genomic
    data
    “dynamic” genomic
    data
    “observational”
    data
  • old school consent
  • new school consent
  • new school consent
    (has a real legal tool underneath)
  • coming in 2012.
  • want to learn more?
    follow @wilbanks
    follow @sagebio
    http://del-fi.org/consent
    http://sagebase.org/commons